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Background: Despite growing recognition of their right for inclusion in society, people with intellectual disabilities are often excluded from mainstream services, or experience poor service outcomes. Method: Taking a relational approach that considers the interpersonal relations and interactions that occur in mainstream service settings in Australia, this paper examines the features of services that research participants considered more inclusive. Results: Relations between service users with and without intellectual disabilities, mainstream service staff and disability support workers in inclusive mainstream services were characterised by; respect; warm, welcoming and convivial interpersonal engagement; active listening; proactive assistance; flexibility; mediation to create a safe environment; and collaboration and shared responsibility by both mainstream staff and disability support workers in supporting a service user with intellectual disability. Conclusions: Building on these results, we put forward a set of principles for facilitating inclusion of people with intellectual disabilities in mainstream services. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities may find difficulties in their school-to-work transition. The current study aimed to determine which factors have been investigated and which are relevant to this transition process. Method: A systematic review was undertaken using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines and included studies published between 2011 and 2023 on initiatives that facilitate the school-to-work transition. Results: Four broad types of interventions were encountered: career and vocational guidance, training for the development of key competencies, school-based transition programs, and work-based learning. Most studies were quantitative and included key competencies in training activities that focus on specific skills that facilitate the school-to-work transition process. Conclusions: In order to enable the continuity of processes related to school-to-work transition and to improve inclusive employment and social skills for people with intellectual disabilities, there is a clear need to collect initiatives across countries. [ABSTRACT FROM AUTHOR]

This study reports the findings from a Dutch study, exploring care workers' challenges and approaches in guiding young people with intellectual disabilities in their online lives. Using an inductive research design 33 semi-structured interviews were conducted with care workers. Care workers report challenges that revolve around three themes: (1) the perceived intangibility of the online lives of clients and (2) Risk perception: feeling stuck between control and freedom. (3) Differences in guiding approach between care workers. Based on these results a conceptual model is presented that aims to show the connection between these challenges and guiding approaches. Perceptional processes may influence care workers' guiding approaches. This raises important questions about the implications of these guiding approaches on the level of support clients with intellectual disabilities receive and the effectuation of their rights and liberties under the 2006 United Nations (UN) Convention on the Rights of Persons with Disabilities. [ABSTRACT FROM AUTHOR]

Direct support professionals' (DSPs') attitudes toward nutrition are important for supporting a healthy lifestyle of persons with intellectual disabilities. However, there are no instruments to measure it. The aim of this study was to compose a questionnaire and determine its internal validity. The previously validated Health Enhancing Physical Activity questionnaire was adapted into the Attitude of DSPs for Health Enhancing Nutrition (ADSP-HENU) and completed by 31 DSPs. The internal validity of the questionnaire was investigated by Cronbach's Alpha and an exploratory non-parametric item response analysis (NIRT). The internal consistency by Cronbach's Alpha was good (0.87, 95% CI [0.81–0.94]). NIRT showed monotonicity with wide confidence bounds and sufficient point polyserial correlations of the items. This indicates that each attributes to the overall measured attitude. The internal validity of the ADSP-HENU is promising, and it can be used in daily practice for evaluation or adapting interventions to DSPs' needs. [ABSTRACT FROM AUTHOR]

Australian research indicates that post-parental care transitions are rarely planned and primarily occur following a crisis for a primary carer. This paper examines disability staff perceptions of transitions for people with intellectual disability and their ageing carers in rural South Australia. A focus group interview model was used, with a semi-structured interview guide initiating group discussions. A thematic analysis methodological approach was selected to analyse the data. This paper reports on the theme of Service Delivery, which has three sub-themes of Availability; Distance; and Individual Access. The key findings are presented and supported by the use of exemplar quotes. This research indicates a poor intersection of general and specialist services is inhibiting post-parental transitional care for rural people. Simply allocating money to the individual does not resolve the issues, and the interface between different services needs to be better considered at government level. [ABSTRACT FROM AUTHOR]

Background: Constipation impacts health-related quality of life with a burden similar to other chronic conditions. This study characterises the prevalence of constipation and its associated factors in older adults with intellectual disability. Methods: Data from the Intellectual Disability Supplement of The Irish Longitudinal Study on Ageing was analysed using bivariate and multivariate approaches. Results: Constipation affected 43.5% of this cohort and was more common in females, those in residential settings, and those with a severe/profound level of intellectual disability. The type of residence, level of intellectual disability, a low fat diet, high cholesterol, multimorbidity and, physical activity predicted constipation status with 67.7% accuracy. Physical activity was associated with lower constipation prevalence, where minimal activity was sufficient to observe this effect. Conclusions: Constipation is a common health concern in older people with intellectual disability. This analysis reveals characteristics that should inform the careful monitoring of bowel health in this population. [ABSTRACT FROM AUTHOR]

This study reports the findings from a Dutch study, exploring care workers' knowledge and perceptions of the online lives of adolescents with mild or borderline intellectual disabilities. Using an inductive research design 33 semi-structured interviews were conducted with care workers. Three themes were derived from the data: (1) The clients' online world is largely unknown to care workers. (2) The online world is a gateway to an inclusive and connected life. (3) The online world is a dangerous and challenging place. Care workers have limited knowledge of clients' online lives. Care workers show ambivalence about the good and bad of the Internet for their clients. They acknowledge the possibilities of the Internet but mostly perceive it as a place of risk and challenge. Paradoxically, care workers report little experiences of incidents of online risks. Perceptional processes might help explain why this paradox exists. [ABSTRACT FROM AUTHOR]

Autistic people commonly report differing sensory experiences. This research aimed to find out about sensory issues and the sensory environments of autistic adults who did and did not have intellectual disabilities. Online questionnaires were designed to identify sensory needs. The survey was completed by 138 autistic adults who self-reported and 58 informants reporting about autistic adults who had intellectual disabilities. Autistic adults self-reported high numbers of sensory needs compared with informant reports of the needs of autistic adults who had intellectual disabilities. It is possible that informants under-reported issues for autistic adults with intellectual disabilities. Some sensory needs are harder to observe and people with intellectual disabilities may find it difficult to communicate such needs. The authors propose that better methods of supporting communication of "harder to observe" sensory needs should be developed. Further research is needed. [ABSTRACT FROM AUTHOR]

BackgroundPeople with intellectual disability have a limited understanding of dying and death. The role of parents in developing the understanding of their son or daughter with intellectual disability about these concepts is unclear. This study aimed to explore parental experiences when talking with their son or daughter with intellectual disability about dying and death. MethodFour participants were interviewed about how they discussed dying and death with their son or daughter with intellectual disability. Thematic analysis was used to interpret the findings. ResultsParents did more than talk to their son or daughter about death; they involved them in dying and death experiences. Parents’ motivations influenced the way they included their son or daughter in these experiences. ConclusionsThe parents played an important role in providing learning experiences for their son or daughter with intellectual disability about dying and death. [ABSTRACT FROM PUBLISHER]

Background The impact of music therapy on the communicative behaviours of young people with profound intellectual and developmental disability has not yet been established. Method Four adolescents participated in individual music therapy (MT) and toy play sessions with the same therapist in a 6-month period. Sessions were video-recorded and analysed based on The Inventory of Potentially Communicative Acts (Sigafoos, J., Arthur-Kelly, M., & Butterfield, N. (2006). Enhancing everyday communication for children with disabilities. Baltimore, MA: Brookes) to compare the communicative behaviours within each condition. Results Both conditions successfully engaged the young people, with slightly more communicative behaviours observed in MT in response to singing, and more rejecting behaviours in toy play. MT was therefore considered equivalent to toy play in terms of quantity, but distinctive in eliciting more mutually enjoyable interpersonal encounters. Conclusion MT creates engaging and motivating conditions for interactions with others, which suggests the need for greater integration of music therapy into special education classrooms. [ABSTRACT FROM AUTHOR]

Background Challenging behaviour of clients influences emotional wellbeing of staff; this in turn affects levels of staff engagement and avoidance within interactions with clients. The main goal of this study was to investigate to what extent levels of staff engagement and staff avoidance are related to challenging and desirable client behaviours and clients' initiatives for contact. Method Participants were 8 support staff and 3 clients. Staff and client behaviours were measured within moments of interaction in natural settings using systematic observational data. Results The results showed that general levels of staff engagement, avoidance, and client behaviours seem to be related. However, individual, sequential analyses do not support these relationships. Conclusions Future research should take a more individual and intrapersonal view of staff behaviour and staff–client interaction into account, in order to obtain a detailed and realistic image of individual patterns in interactions between support staff and clients. [ABSTRACT FROM AUTHOR]

Background The study reported here was an examination of the reliability of a method for determining acquiescent responding and the capacity to respond to items using a Likert scale response format by adults with an intellectual disability. Method Reliability of the outcomes of these procedures was investigated using a test-retest design. Associations with receptive vocabulary were examined. Results The majority of the participants did not demonstrate acquiescent responding. Individuals' responses to the Likert-type discrimination tasks were consistent, although this varied somewhat depending upon the abstractness of the task. There was some association between receptive language age equivalence scores and respondent performance. Conclusion It is recommended that the pretest protocol (a) be modified to improve its reliability, and (b) this modified version be used with study participants who have an intellectual disability to ascertain the appropriate level of choice to be used for items that use a Likert response format. [ABSTRACT FROM AUTHOR]

In this article the authors discuss data on Australians from a non-English speaking background that have intellectual disabilities. They are critical of a lack of data which has been published on non-English speaking Australians with intellectual disabilities and of the impact that the lack of research has on people with disabilities and on Australian government policy on disabilities.

Background Active support is an effective intervention to support engagement of residents with intellectual disability in group homes. This survey explored resident characteristics of the people supported by organisations implementing active support, the provision of active support, its procedures and systems, and resident engagement in meaningful activity and relationships. Method Information was collected through questionnaires and direct observation of 33 group homes from 6 organisations in Victoria, Australia, with a 5-10-year history of implementing active support. Results Residents with lower support needs were engaged with little staff contact or assistance. Use of active support systems and structures was mixed. Only one organisation consistently provided good active support. Conclusions Administrative systems and structures are not sufficient to change staff interaction and thus resident experience. Shared supported accommodation services may represent an inefficient use of resources for more able residents, as staff resources are not maximised to support for resident engagement. [ABSTRACT FROM AUTHOR]

Background In Sweden, a process involving the deinstitutionalisation of services and the establishment of community-based settings for people with intellectual disability has meant changes in meal arrangements. In the present study, we focus on the social arrangements of meals in community-based settings. Method Participant observations were used to study the meals as social events for 32 participants, 9 of whom lived in supported living and 23 in group homes. Results Breakfast and dinner were often eaten alone, while lunch at the daily activity centre and the food eaten between meals (snacks) were mostly shared with other people. Meals for participants in supported living were seldom social, and meals for participants in the group homes often hierarchical. Conclusion The participants were often limited in choosing their company at meals, which typically consisted of other people with intellectual disability and staff. If they made such choices, they were dependent upon staff support to realise them. [ABSTRACT FROM AUTHOR]

Background Statistics are critical in holding governments accountable for the well-being of citizens with disability. International initiatives are underway to improve the quality of disability statistics, but meaningful ID data is exceptionally rare. Method The status of ID data was evaluated in a review of 12 national statistical systems. Recurring data collection by national ministries was identified and the availability of measures of poverty, exclusion, and disadvantage was assessed. Results A total of 131 recurring systems coordinated by 50 different ministries were identified. The majority included general disability but less than 25% of the systems screened ID. Of these, few provided policy-relevant data. Conclusions The scope of ID data was dismal at best, though a significant statistical infrastructure exists for the integration of ID data. Advocacy will be necessary. There is no optimal form of data monitoring, and decisions regarding priorities in purpose, targeted audiences, and the goals for surveillance must be resolved. [ABSTRACT FROM AUTHOR]

Background Little is known about child disability and dynamic aspects of poverty. Method Analysis of data collected over a 12-month period for families (a) supporting a child with intellectual disability ( n = 370), (b) supporting a child with other disability ( n = 1,418), and (c) supporting a child with no disability ( n = 7,215). Results When compared to families not supporting a child with disability, families supporting a child with intellectual disability were (a) more likely to be poor, (b) more likely to become poor, (c) less likely to escape from being poor. Half of poverty transitions were associated with identifiable potential trigger events. Conclusions There were few differences between families supporting or not supporting a child with disability with regard to either levels of exposure to potential trigger events or to the strength of the association between exposure and poverty transitions. [ABSTRACT FROM AUTHOR]

Background Often communication training has been directed at the communication practices of staff members working with people with multiple learning disabilities. To date, the thinking habits of staff members, which also influence interactions, have not been addressed. We identified the issues staff members perceived as important for their development as communication partners after participating in a communication training program. Method Six key staff members participated in semistructured interviews that explored the insights they had gained during participation in the Finnish communication training program OIVA. Results Participating staff members identified issues relating to the communication practices and thinking habits they had acquired during the training. Both communication practices and thinking habits were important for the staff members' development as communication partners. Conclusions The findings of this study suggest that it is important to give staff members the opportunity to learn new practices and to explore the thinking that underpins the actions they perform during communication training. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities have traditionally been excluded from Advance Care (AC) planning. This study aimed to improve access to and the quality of AC planning for this community. Method: A Participatory Action Research study was led, and participated in, by co-researchers with intellectual disabilities and disability service managers. A new approach to AC planning was trialled and evaluated. Results: The new approach aided the initiation and development of comprehensive AC plans with people with intellectual disabilities. The completed plans were approved by health professionals. Contributing factors related to getting started, the materials, and the process. Conclusion: The emergent framework, developed in response to the findings, provides a potential pathway for implementation and further exploration of AC planning. [ABSTRACT FROM AUTHOR]

BackgroundHaving a child with intellectual disability impacts all family members, with both parents and siblings having to adjust. Negative impact on the typically developing sibling, specifically, has been shown to vary based on caregiving responsibilities and mothers’ stress level. MethodThis study gathered information from 238 Latina and Anglo mothers of young adults with intellectual disability to explore sibling negative impact related to maternal stress, positive feelings about parenting, sibling diagnostic category, and cultural group. ResultsMothers experiencing more stress reported higher levels of sibling impact; mothers with more positive feelings about parenting reported lower levels of negative impact, with Latina mothers reporting higher levels of stress and positive feelings about parenting. Anglo mothers, however, were less likely to designate a sibling as a future caregiver. ConclusionsThese findings suggest culture and diagnostic classification should be given more attention relative to their impact on typically developing siblings. [ABSTRACT FROM PUBLISHER]

BackgroundThe lifespan of women with intellectual disability (ID) has been steadily increasing, bringing new and unique challenges to these individuals and those who support them. Understanding these issues will help to improve support services for this population. MethodsUsing inclusive research methods, 15 older women with ID were interviewed about their wellbeing and their views on growing older. ResultsInterview data were analysed using the grounded theory approach. The core phenomenon identified through data analysis was “changes in life.” ConclusionThe women reported a growing loss of independence as well as changes in their health and activities. Analyses revealed factors important for wellbeing as well as different coping strategies used by the women to deal with the age-related changes in their lives. [ABSTRACT FROM PUBLISHER]

BackgroundDespite good policy intentions, people with intellectual disability continue to be socially excluded. Social geographers suggest the potential of self-authored spaces as catalysts for social inclusion. One such space, self-advocacy, is commonly perceived as part of a political movement for social change rather than a vehicle for social inclusion of its members. This paper investigated what involvement in self-advocacy has meant to long-term members of a self-advocacy group in Victoria, Australia. MethodsIn-depth interviews were conducted with 12 self-advocates about their reflections on involvement in the group. These data together with the commentary of 5 self-advocates during interviews with 18 self-advocacy supporters about their recollections of involvement in the group were transcribed and analysed thematically. FindingsThrough their involvement in self-advocacy, members of the group had gained a sense of belonging, social connections, and purposeful occupation, which included paid project work, lobbying, and organisational leadership and management. ConclusionsThis study suggests that self-advocacy groups can be places that foster social inclusion, potentially offering “membership” of an exclusive group, a wider social movement and of mainstream society. [ABSTRACT FROM PUBLISHER]

Background The social processes that operate in community groups need to be better understood if people with intellectual disability are to be included in such groups. This study aimed to identify the nature and impact of the group processes on the active participation of people with intellectual disability. Method Extensive field notes were taken during 2 years of participant observation whereby 5 people with a moderate level of impairment were supported to participate as individuals in community groups for periods of 5 to 10 months. Analysis used a critical realist approach. Results Active participation was influenced by the interaction of 5 key social processes: leadership response, characteristics of the participants with intellectual disability, access to expertise, the presence of an integrating activity, and dealing with the difference dilemma. Conclusions By revealing these processes, the study identified a number of interventions and ways of approaching community groups that have the potential to increase the extent to which people with moderate levels of impairment become active participants. [ABSTRACT FROM AUTHOR]

Background POMONA II was a European Commission public health-funded project. The research questions in this article focus on age-specific differences relating to environmental and lifestyle factors, and the 17 medical conditions measured by the POMONA Checklist of Health Indicators ((P15)). Method The P15 was completed in a cross-sectional design for a stratified sample of 1,253 adults with ID across 14 European member states. Results Older people ((55++)) were more likely to live in larger residential homes. Rates of smoking and use of alcohol were lower than in the general population but were higher with older age. More than 60%% of older adults had a sedentary lifestyle. Cataract, hearing disorder, diabetes, hypertension, osteoarthritis//arthrosis, and osteoporosis were positively associated with advancing age; allergies and epilepsy, negatively associated. Conclusions Some evidence of health disparities was found for older people with ID, particularly in terms of underdiagnosed or inadequately managed preventable health conditions. [ABSTRACT FROM AUTHOR]

Background A major milestone in the transition to adulthood is leaving the parental home, known as launching. This study explored the experiences of 2 young people with intellectual disability during launching into individual supported living, including the impact of a Western Australian (WA) funding approach. Method Two case studies employed interviews, documentation review, and observations. Three staff members of the WA Disability Services Commission participated. Results The transition period was stressful for parents. Gaining independence occurred gradually for the young adults and was influenced by parent involvement. All parents desired more formal support. Social isolation was a major issue for the young adults. Conclusions Families need long-term assistance to prepare for launching, and parents may need reassurance as they withdraw from their caring role. More consideration is needed into how young people with intellectual disability may be best supported to develop friendships. [ABSTRACT FROM AUTHOR]

Background This paper explores how group home staff in Victoria, Australia, responded to residents with an intellectual disability (ID) as residents developed age-related health conditions. Method The analysis was based on a longitudinal study that followed 17 ageing group home residents over a 3-year period. Eighty-three interviews were conducted with 30 group home staff in 17 group homes. Dimensional analysis, a variant of grounded theory, guided data collection and analysis. Results Findings revealed that the organisations all had systems in place to address health issues. However, the results also suggest an inability of staff to differentiate between significant health conditions and normal age-related changes, thus contributing to delays in care for serious medical conditions. Conclusions Lack of knowledge about normal ageing and an absence of organisational policies influence timeliness of diagnosis and treatment for people with ID. Group home staff could be more effective advocates for older residents, leading to improvements in health outcomes, if they had basic knowledge about normal ageing and symptoms of common age-related illnesses and if group home agencies provided clearer guidance to their staff. The study has implications for staff education and organisational policy development for group homes. [ABSTRACT FROM AUTHOR]

Background Many standardised balance measures are unsuitable for people who are unable to comprehend test requirements. We report on the development, administration, interrater reliability, and concurrent validity of a video-based balance measure for people with intellectual disability called the Balance Scale for Persons with Intellectual Disabilities. Method Video recordings of 25 people performing 7 common motor tasks, identified from stakeholder consultation, were made, and rated using standardised scoring criteria. Concurrent validity, assessed against the Tinetti Gait and Balance Instrument and the modified Gait Abnormality Rating Scale (GARS-M), and interrater reliability of the scale was evaluated with 19 physiotherapists. Results Scores suggested no ceiling or floor effects. Excellent interrater reliability (ICC = .9) was demonstrated. Concurrent validity was good against the Tinetti (ρ = .98) and the GARS-M (ρ -.87). Issues around lighting for video-recording a lack of steps or stairs in the home setting were encountered. Conclusion The new measure may be useful in trials assessing the effectiveness of interventions aimed at improving the balance capabilities of people with intellectual disability. [ABSTRACT FROM AUTHOR]

Background Sexuality and relationship education for adults with an intellectual disability has failed to include them in roles other than as learners. This paper reports findings from a study of the experiences of peer educators with an intellectual disability who co-facilitated a respectful relationships education program. Method Qualitative data were collected about the experiences of 16 peer educators through in-depth interviews and observations of their work in delivering the program. These data were thematically analysed. Findings Peer educators reported that peer education gave them a sense of empowerment, positioned them as credible sources of information about relationships, enabled them to help others, and gave them an opportunity to learn new knowledge about respectful relationships, community resources and supports, and new skills. Conclusions This study presents an alternative approach to relationship education that involves people with an intellectual disability as peer educators and that benefits these people. [ABSTRACT FROM AUTHOR]

Background Sex education programs have been developed with paid care staff as sex educators. However, no information is available about whether these programs are being delivered. Method The aim of this study was to investigate whether paid care staff working in an organisation specialised in the care of people with mild to moderate intellectual disability teach sex education or not. An online questionnaire was therefore constructed to assess the important factors associated with teaching sex education. Results Of the 163 staff members who completed the questionnaire, 39% provided sex education. Results show that it was mainly provided reactively. The main factor was the perceived social norm towards teaching sex education. Conclusions If we want paid care staff to teach sex education reactively, then we need to focus on changing the perceived social norm. However, if we want them to teach sex education proactively, a new needs assessment should be conducted in order to identify the important factors to motivate and enable them to provide sex education. [ABSTRACT FROM AUTHOR]

Background Sexual health remains one of the most overlooked areas of life for people with intellectual disability. In recent years there has been an increasing expectation that this issue will be addressed by disability service providers. In this paper we examine the barriers to sexual health provision of people with intellectual disability as experienced by disability service providers and clinicians. Method This research uses a constructionist grounded theory approach. It was conducted in 2 phases using semistructured qualitative interviews to collect data from disability service managers and clinicians working with people with intellectual disability in New South Wales, Australia. Findings and Discussion Key themes within the interviews -- including funding shortages and a lack of policy guidelines -- were identified as significant administrative barriers to sexual health provision. Myths about the sexual health of people with intellectual disability, family attitudes, and lack of staff training were also identified as barriers. [ABSTRACT FROM AUTHOR]

Background Human rights provide fundamental conditions for people to maintain dignity and self-determination and protect a nation's most vulnerable citizens. In South Africa, children with intellectual disability who experience socioeconomic disadvantage may be particularly vulnerable due to their cognitive impairments and inability to garner needed resources. Method The perceptions of children with intellectual disability regarding their access to basic amenities in their home environments were examined to determine whether their positive human rights were met. Risk factors were examined in relation to these perceptions. Results The results suggested that participants generally reported high degrees of access to basic resources. Logistic regressions suggested socioeconomic risk factors (e.g., income, education, household size, relationship status) were negatively related to children's reports of access to food and their own beds and positively related to having someone available to explain confusing concepts to them. Conclusions The positive human rights of children living in high-risk environments should be monitored to ensure all South Africans have their rights met. [ABSTRACT FROM AUTHOR]

Background The provision of residential services for adults with intellectual disability in developing countries has not been widely researched. This study presents a survey of such facilities in a South African context. Method Managers of 37 nongovernmental facilities in the Western Cape Province of South Africa responded to a survey about their facilities and their residents. Results Facilities struggled with accessing adequate funding, and tended to focus more on their protective role than on the promotion of human rights. Residents were generally isolated from the community, and did not receive vocational and life skills development. Conclusion Residents in facilities are far from realising their human rights as delineated in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Although the need remains for such facilities and the protective function that they offer, services in low- to middle-income countries should still be evaluated and developed in line with human rights principles. [ABSTRACT FROM AUTHOR]

Background Raising children with borderline to mild intellectual disability (BMID) and psychosocial problems may yield a strong need for support among parents, but evidence for this is lacking. The aim of this study was to investigate the prevalence of need for parenting support in this population, and the child and parent characteristics that influence this need. Method We obtained data from parents of 944 children aged 5–12 years with BMID (IQ 50–85) in the Netherlands: 134 (14.2%) of these parents had a need for parenting support. Results The results of multiple regression analyses revealed that parenting stress and child psychosocial problems, adjusted for age and gender of the child, were associated with a need for parenting support. Conclusions One in seven parents with a child with BMID has a need for parenting support. Determinants associated with a need for parenting support are parenting stress and child psychosocial problems. [ABSTRACT FROM AUTHOR]

Background Social inclusion is a widely acknowledged goal; who is best positioned to provide support and how support is delivered are key questions. Using Active Mentoring training, members of community groups mentored a person with intellectual disability and supported their inclusion in that group. Methods Interviews with 14 mentors explored their experiences of supporting a previously unknown person with intellectual disability to participate in their community group. Findings The core theme was No Different From Us. Mentors saw beyond the disability, they valued others, were community leaders, and had intrinsic qualities. With some basic orientation to the task, mentors were able to support the inclusion of their mentee in the group. Conclusion Community members are willing to support people with intellectual disability to join their community groups. The Active Mentoring training is one way of harnessing the goodwill of community groups and their members to include people with intellectual disability to participate on an individual basis in community groups. [ABSTRACT FROM AUTHOR]

Background Motivational interviewing is a promising method to increase treatment motivation for people with mild intellectual disability and challenging behaviour. The purpose of the present study was to identify how professionals could adapt motivational interviewing techniques for use with clients. Method We conducted semistructured qualitative interviews and focus groups with 26 clients, parents, and professionals. A general inductive approach led to the identification of multiple core themes. Results The authors recommend several modifications to accommodate motivational interviewing for use with clients: adapt to language level, adjust to cognitive abilities, and control for social desirability of responding. In addition, certain characteristics of professionals were also found to be critical for effective motivational interviewing: trustworthiness, engagement, acceptance, empathy, and honesty. Conclusions Concrete recommendations for the adaptation of the motivational interviewing techniques for use with people with mild intellectual disability and challenging behaviour are identified. Certain characteristics of professionals are also critical for maximising the treatment motivation of clients. [ABSTRACT FROM AUTHOR]

Background The aim of this paper was to evaluate the reliability and validity of the Equity Perception Scale - Intellectual Disability Services (EPS-IDS), a detailed measure of staff equity perceptions in services for people with intellectual disability (ID). The EPS-IDS contains 3 relationship indices that assess staff relationships with their employing organisation, their co-workers, and service users. Method Postal questionnaires were used to collect quantitative data from a purposive sample of ID service staff. Results The EPS-IDS was found to have good internal consistency reliability. The overall test-retest reliability of the measure, however, was found to be less satisfactory. With the exception of the co-worker relationship index, the EPS-IDS indices were found to have promising validity. Conclusions The findings from the study suggest that the EPS-IDS shows some promise as a measure of the equity perceptions of ID service staff. Further refinements to the relationship indices, however, may be required. [ABSTRACT FROM AUTHOR]

Background The transition from school to adulthood for young adults with an intellectual disability involves movement from a generally secure and supported school environment to an emerging adult life that may be characterised by a wide variation in adoption of adult roles related to employment, independent living, friendships, and day activities. Method In this study, we investigated the perspectives of 18 mothers of young adults with either Down syndrome or Rett syndrome through qualitative semistructured interviews. The International Classification of Functioning, Disability and Health (ICF) framework was used as a conceptual basis. Results Themes that emerged included adult roles assumed during the day, accommodation, quality of life, living a 'good' life, and family impact. Conclusions In contrast with Rett syndrome, mothers of young adults with Down syndrome described more difficult pathways to attaining stability in adult roles. Environmental facilitators and barriers emerged in the area of support, relationships, services, systems, and policies. [ABSTRACT FROM AUTHOR]

Background Researchers, professionals, and families have shown increasing concern with the family quality of life (FQoL) of people with intellectual disability (ID) and their families. The goals of this research were (a) to explore how Spanish families understand FQoL by developing 2 different measurement tools for families with a member with ID under and over 18 years old, and (b) to provide 2 diagnostic instruments that will be useful for designing action plans. Method The study comprised 4 stages: (a) focus groups, (b) expert assessment, (c) pilot study, and (d) normalisation and standardisation. The data were collected in 5 regions in Spain, and 1,205 families with a member with ID took part in the normalisation and standardisation of the scales. Results Both FQoL scales were consistent and have valid psychometric characteristics. Conclusions The scales have a diagnostic purpose for use in designing action plans aimed at producing significant changes in families' lives. [ABSTRACT FROM AUTHOR]

Background In this study we aimed to develop a Spanish version of the Self-Efficacy/Social Support Scales for Activity for persons with Intellectual Disability (SE/SS-AID). Method A cross-sectional study was carried out in a sample of 117 individuals with intellectual disability (ID). The SE/SS-AID scales were translated into Spanish and their psychometric properties analysed. Results Confirmatory factor analysis showed acceptable fit (CFI = .94 for the SE-AID and .95 for the SS-AID), but RMSEA values outside of the optimal fit range (.28 and .15, respectively). Cronbach's α was calculated for the SE-AID, SS-AID-family, SS-AID-staff, and SS-AID-peers scales, with results from .80 to .82. Conclusions The scales show acceptable validity and reliability evidence. Use of this instrument will allow researchers to gain more knowledge about how personal and social factors influence participation in physical activity in Spanish-speaking people with ID. [ABSTRACT FROM AUTHOR]

Background Previous research indicates that work stress contributes to intentions to quit among direct care workers (DCWs) who provide services to people with intellectual and developmental disability (IDD). Though resources can help DCWs cope and remain in a job, little is known about how various dimensions of work stress and resources (social and personal resources) are associated with intentions to quit. Methods A total of 323 DCWs from 5 community-based IDD organisations completed a self-administered survey. We conducted multiple regression analyses to examine main and interaction effects of work stress and resources (work social support and internal locus of control) on intentions to quit. Results Work overload was a significant stressor, and work social support (i.e., supervisory support) was associated with low intentions to quit. The association between locus of control and intention to quit depended on the levels of a stressor: DCWs' lack of participation in decision-making. Conclusions Supervisory support and an internal locus of control may assist DCWs in managing their stress. [ABSTRACT FROM AUTHOR]

Background Social inclusion is central to disability policies internationally. The high risk of social exclusion for people with intellectual disability is compounded for those with challenging behaviour. Method A systematic literature review examined how social inclusion of people with intellectual disability and challenging behaviour has been researched and operationalised in the empirical literature, and aimed to determine what evidence exists about the extent of social inclusion by people with intellectual disability and challenging behaviour. Results A thematic analysis of the 14 papers identified that social inclusion has been poorly defined and measured, and that the little research that has occurred in respect of people with challenging behaviour has demonstrated their potential to be socially included. Conclusions Clearer conceptualisation of inclusion, and greater understanding of practices that support social inclusion and system level mechanisms, which ensure goals around inclusion gain prominence in funding and support plans, may address the neglect of this critical quality-of-life domain for people with challenging behaviour. [ABSTRACT FROM AUTHOR]

Background Relationships develop through social interaction and assist with participation and inclusion. Little is known about how relationships develop between people with severe intellectual disability who have limited communication and others. Method Interactions were observed between 6 adults with severe intellectual disability and paid workers or family members with whom those adults had positive relationships. Workers and family members were interviewed. The data were analysed through a grounded theory approach. Results Data analysis led to the identification of 5 processes that underpin positive relationships: recognising individuality, sharing the moment, connecting, feeling good, and sharing the message. Conclusions A relationship model with clearly identified processes and sub-elements provides a framework for teaching others how to have positive relationships with people with severe intellectual disability. The model could be applied in training to support relationships between workers and people with a disability and more widely with other community members. [ABSTRACT FROM AUTHOR]

Background Despite the frequency with which mothers with intellectual disability have their children removed, little theoretical or empirical work has understood the mothers' perspectives on this. A few studies have reported mothers' feelings of grief and loss and their sense of powerlessness in the child protection system. Method This qualitative study explores the daily life narratives of 7 mothers with intellectual disability following the involuntarily removal of their children. Results For most mothers, having a child removed was not a one-off experience. The serial nature of the experience yielded 3 different narratives, lived out in different ways. In some cases, women told a different narrative for each of their removed children. All women remained focused on their children in care. Conclusions The multiple and varied narratives of mothers with intellectual disability who have children in care suggest that their support needs may differ from each other and over time. How their support needs might best be met remains an unanswered question. Further research is also needed to identify any adverse health and social consequences for mothers with children in care as well as the effects on their children. [ABSTRACT FROM AUTHOR]

Background Most instruments that assess quality of life have been validated by means of the classical test theory (CTT). However, CTT limitations have resulted in the development of alternative models, such as the Rasch rating scale model (RSM). The main goal of this paper is testing and improving the psychometric properties of the INTEGRAL Quality of Life Scale (i.e., fit statistics, person and item reliability coefficients) with RSM. Method The sample comprised 271 Spanish adults with intellectual disability. Results The results showed that the data fitted the model, point-biserial correlations were adequate, items showed precision, reliability of items (.98) and persons (.89) were adequate, and the response categories were suitable (thresholds were ordered). However, one item ('I feel excluded from society') did not fit the model and a few items were too easy for participants to achieve. Conclusions Although it seems necessary to include more difficult items and to delete one, the INTEGRAL Scale is a useful instrument with evidence of validity. [ABSTRACT FROM AUTHOR]

Background Earlier research shows that nonemployed mothers of children with intellectual disability (ID) have lower wellbeing than employed mothers. This study explored why and to what extent these mothers did not participate in the labour market. Method An in-depth interview was employed, and 18 working-age and nonemployed mothers in Taiwan who had an adult child with ID were interviewed in their homes between July 2009 and May 2010. Results The mothers left the labour market at different stages of the family life cycle due to a lack of formal/informal support for the care needs of their young children, and the continuing intensive care needs of their child with ID. Mothers were officially nonemployed; however, to meet their family's financial needs, they were hidden workers in practice. Conclusions Policies are required that support these hidden female workers, who are also lifelong carers, by offering financial support and affordable social services. [ABSTRACT FROM AUTHOR]

Background Transition partnerships are considered a key factor in fostering transition to adulthood for young people with intellectual disability (ID). The aim of this research was to analyse the transition partnerships between services and projects that support young people with ID in their transition to adulthood from the perspective of the professionals involved. Method Semistructured interviews were conducted with 45 key professionals from different postschool and school projects to obtain information regarding the main problems found in coordinating the services, the causes of these problems, and suggestions for improvement. Results A lack of continuity was highlighted in the support for young people with ID during the transition process. Insufficient information and collaboration between services and professionals and a lack of leadership were the main problems perceived by professionals. Conclusions Our research stresses the need for clear guidelines to be established regarding the distribution of roles and responsibilities between the professionals and services involved in transition. Improving communication processes between professionals and between them and young people and their families is underlined as a way to help young people with ID in their transition to adulthood. Reinforcing the role of the local area is also recommended. [ABSTRACT FROM AUTHOR]

Background To develop effective education strategies, a detailed knowledge of the working memory profile in Down syndrome (DS) and autism with intellectual disability (ID) is required. Materials and Methods Fifteen adolescents with DS, 11 boys with autism and ID, and 12 boys with nonspecific ID (NSID) were compared on 2 versions of a novel working memory task that varied only in modality of presentation (visual or auditory). Results The groups with DS and with autism and ID demonstrated significantly poorer working memory performances than the group with NSID. No predictors of working memory performance were found. Conclusions Recommendations to support the working memory difficulties of the groups with DS and autism and ID in the classroom include reducing the amount of information to be processed at a time, as well as providing visual or verbal (as appropriate) prompts and cues to reduce the need to hold information in working memory. [ABSTRACT FROM AUTHOR]

Background Alcohol use and misuse may be lower in people with intellectual disability (ID) than in the general population but may be related to offending. Method Alcohol-related crime and history of alcohol use was recorded in 477 participants with ID referred to forensic ID services and related to offending. Results Level of alcohol-related crime and history of alcohol misuse was lower than in some previous studies at 5.9% and 20.8%, respectively. History of alcohol abuse was associated with alcohol-related offences and theft. Higher rates of alcohol problem history were associated with histories of a number of offences, psychiatric disturbance in adulthood, psychiatric disturbance in childhood, and experiences of childhood adversity. Most effect sizes were weak or moderate. Conclusions The convergence of childhood adversity, psychiatric problems in childhood and adulthood, and alcohol abuse is consistent with studies that have found these as risk markers for offending. [ABSTRACT FROM AUTHOR]

Background Hastings (2010) has recently emphasised 3 aspects in the training of staff who serve clients with mild to moderate intellectual disability and challenging behaviour (CB): Staff attitudes, self-awareness, and clients' perspectives. This study investigates whether programs include these aspects. Method A systematic search yielded 11 relevant articles. Results Generally, all programs aimed to improve staff knowledge and skills. Client variables concerned frequencies and severities of CB. None of the studies included clients' perspectives or staff attitudes and self-awareness. Conclusions The fact that staff attitudes and awareness or clients' perspectives were not among the main goals of the training studies suggests that recent views of effective treatment of CB are not yet the object of scientific study. Given the acknowledgment of these aspects, it is warranted that future research focuses upon these recent insights. [ABSTRACT FROM AUTHOR]

Background The aim of this descriptive single case study was to describe a unique interaction with a person with profound intellectual and multiple disabilities (PIMD) in a holistic way-focusing on the client, the staff member, and the interacting dyad-and to include the experiential knowledge of the interaction partner. Method A videotaped interaction of the staff-client dyad was analysed by triangulating data from video analysis, documents, observational rating scales, and an interview with the staff member. Results The interactional pattern revealed in this study is that of a staff member who offers an activity that is considered to be stimulating for the client, by using a variety of initiatives and structuring strategies, and a client who is alert and responsive, but has limited chances to take own initiatives. Rather low scores were obtained on observations from a dialogical perspective. Conclusions This study highlights the value of video analysis for practitioners, demonstrates the usefulness of describing an interaction episode supported by an integrative theoretical framework, and confirms the importance of combining observations by an independent researcher with experiential staff knowledge. [ABSTRACT FROM AUTHOR]